Helping people live until they die

Third in a three-part series about palliative care in the Jewish community

TORONTO — Doctors and nurses who work in hospitals and hospices are crucial members of the teams that help terminally ill patients live out their lives in relative comfort and dignity.

Social workers are also an important part of palliative care in these settings, for both patients and their families.

But often overlooked are the trained volunteers and paid workers who go out into the community to look after people who choose to remain at home for the length of their illnesses.

Virginia Clark Weir is a clinical nurse who works out of the Freeman Centre for Palliative Care at North York General Hospital. The 13-year-old centre mostly provides medical and social work services to patients in their homes (but it also does so on a more limited, acute in-patient basis).

“Our role is to help people live until they die. We help them take control of their own lives,” Clark Weir said.

“We visited one gentleman for 2-1/2 years. He had complications, but with our involvement, together with his family’s support, we were able to help him a great deal,” she said.

“We can’t predict when [there is going to be a crisis], but we can always be called upon. We’re also there for the caregivers. It is often a devastating experience for them, and we try to focus on them as well.

“We try to help each patient and caregiver with the most ideal way to manage care.”

About 95 per cent of the centre’s patients want to remain at home, she said, but there are six beds in the hospital’s palliative care unit that are reserved for dying patients or those who need to have their treatment reassessed.

“We do have the ability to transfer patients from their home on an urgent basis. If patients are under the Freeman Centre umbrella, seamless care is carried on.”

Clark Weir said she finds her work rewarding and challenging.

“We work with patients and families who are moving through uncharted territories, and they feel very vulnerable. We can take them to the next step, and teach them about their new normal. This takes away the fear, and they don’t feel alone.

“I [in turn] have learned a great deal from some very courageous people. It is humbling to be involved with them.”

Arshag Tokmanian, 78, whose wife, Shoushan, was a patient of the Freeman Centre – she died about 1-1/2 years ago – said that when he brought his wife home after a two-month stay in the hospital, they received home care from the Freeman Centre.

“They not only helped her, they helped me. Their philosophy is to support the caregiver as well. They talked to me and helped boost my morale.”

When Clark Weir determined that caring for his wife was beyond his capacity, Tokmanian said, Shoushan was transferred back to the hospital.

“I was so satisfied and touched by the whole process that I have become a volunteer for the hospital. I’m happy to be able to tell them ‘Thank you’ in my own way,” he said.

Beverley Schachter and Lisa Kronenberg, are social workers who work in Jewish Family & Child’s Jewish hospice program, the only culturally specific hospice program in the Toronto area. The inter-agency program is also served by Circle of Care, which recruits and trains the volunteers who do hospice home visits.

JF&CS provides case management for Jewish clients, while Circle of Care provides volunteers, as well as case management for non-Jewish clients.

Through JF&CS, Schachter said, caregivers are linked to an array of services, including spiritual care with Rabbi Ronald Weiss, JF&CS’ director of chaplaincy services. “We help build a safety net, which could include six or seven organizations, plus the volunteers from Circle of Care,” she said.

“At a time like this, caregivers’ resources become stretched. We provide care for them as well. Our huge counselling piece gives respite to the caregivers.”

She said that while UJA Federation of Greater Toronto funds the bulk of the hospice program, United Way funds the counselling.

Kronenberg said the program supports the needs of young people and older people. “An illness robs people of their control. We try to help them get back that control and to validate all their accomplishments.”

They undergo 32 hours of training, she said, covering such topics as communication, grief and bereavement, and care for the caregiver. “Before a volunteer visits a patient, we ensure that they are empowered, and have the tools they need. Ongoing training is also mandatory.”

Springer said volunteers also provide relief for caregivers, and may do some shopping, as well as accompany patients and caregivers to appointments or do some light laundry. “Volunteers are there up to four hours a week.”

Elizabeth Mintoft-Cohen volunteers with the program because she has always liked working with people in challenging situations.

“I like being able to advocate for them. Caring for family members can be difficult, and when caregivers feel it is becoming too much for them, I let them know they are not failures. I am there to support their decisions.”

During one particularly poignant visit, she said, Rabbi Weiss dropped in with electric Shabbat candles. “Lighting the candles with the patient made her feel so good. It helped her get through a rough day.”

Alan Shimmerman began volunteering, he said, after he was approached by another male volunteer. “He gave me so many reasons why I should do it, and I went for it.

“It has been an incredible experience for me. I went through the program, and I was enlightened by each topic. One topic that moved me was ‘loss.’ I thought about what the client was losing , and I thought that I could add something to the client’s life.

“I knew I had made a difference when one of my clients called and said that his friend had arrived from out of town, and he wanted me to meet him.”

Shimmerman said that it’s difficult to describe how special his volunteer work is.

“We have had laughs and fun times. I am there for the person in a different way than everyone else. I’m not their caregiver or their family,” he said.

“It is an honour for me to [share their lives] and make their journey an easier one.”

Sonia W.’s mother received home palliative care through a hospice program for six months before Sonia would even talk about it.

“I couldn’t admit it to myself or to anyone else, because if I said it out loud, it meant my mother was dying.”

Ironically, her mother, who died a year ago, thrived as a result of visits by the volunteer. “She looked forward to them and would talk about it from the moment she woke up.”

It was the volunteer who finally convinced Sonia to embrace the palliative care philosophy, said Sonia, who lived with her mother throughout her illness.

“She made me realize that my mother was so much more comfortable at home than in an acute care ward of a hospital. We didn’t have to spend hours on end in the emergency rooms waiting to be seen,” Sonia said.

“[The volunteer] also became my friend. I could talk to her without feeling I was being a burden, because that is exactly why she was there.”

Sonia said that it didn’t take her long to realize that the volunteers are “special people. They came in and made us feel that we were not alone. Sometimes I would take a short nap while they visited. She convinced me that I needed to take care of myself. I was of no use to my mother if I wasn’t well.”